Lymph Nodes
Comments
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I am so confused about lymph nodes. I was originally diagnosed with DCIS; however, my path from my 2x 1/27/09 mastectomy came back with invasive. The surgeon didn't take any lymph nodes because he thought it wasn't necessary. Now that we know that I had invasive BC, he will have to operate again to extract some lymph nodes. Apparenly SNB is out of the picture because I had a mastectomy with immediate reconstruction. So, how will my surgeon know which lymph nodes to take? Is there some order to it? How will he know how many to take? What if he just happens to take the ones that show no signs of cancer? Is it roullette or is there some science involved here?
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I had a SNB during my mastectomy. It appeared clear but they found a 'micromet' when they tested it again so I have to go in and have levels 1 & 2 removed next. It does not seem to be a clear science but there are three levels in that area and it is standard to remove at least the first two if the SNB comes back positive. My surgeon says she takes out the fatty tissue in that area which usually removes about 10 nodes. I believe the nodes drain in an 'idiosyncratic' pattern so level 1 might be clear but their could be cancer in level 2. I think if 2 is clear the odds are that 3 is clear. I really fought having to go in for this surgery but am convinced that it will give me peace of mind and help us determine my treatment plan. I think the biggest down sides are having another drain line and the possibility of lymphedema.
This website seems to explain it fairly well - http://www.imaginis.com/breasthealth/lymph_nodes.asp
A lot of this does feel like roullette doesn't it? I'm sorry your diagnosis changed and wish you all the best.
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Thank you so much for your response. All information helps so much to quiet my fears. Truly information is power. I'm so sorry that you have to go in again too. Bleah! Nothing like having to get healthy post-op for yet another invasion of one's body. My initial biopsy site got infected so I had to wait for my body to fight that one before I could have the mastectomy. Two steps forward one step back. This is certainly NOT a straight line process. I will go to the website you listed to get more info. Thank you again.
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kfox-
What a nightmare for you!! While you must do whatever it takes to give you peace of mind, I would talk to the surgeon and strongly weigh the increased risk of lymphedema to the necessity removing these nodes. To be honest, lymphedema scares me almost as much as cancer itself. Is your surgeon a general surgeon or a breast specialist?
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He is a general surgeon. I live in a small town and we don't have a breast specialist. I agree with your concerns about lymphedema, which is why I agreed with him about NOT taking any with the mastectomy. However, my understanding is that knowing something about the lymph nodes will be essential for the oncologist to plan my treatment. My cancer isn't even staged until they know about lymph node involvement. I am concerned about lymphedema because I have had hand problems in the past: repetitive stress injury. Give me a computer keyboard and I can flare up my arms in a few hours. It has taken me years to recover.
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kfox-
Check out this website. http://www.breastcancerchoices.org/ I think one of the frequently asked questions concerns nodes. Best luck to you.
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Hi, kfox,
I'm really sorry you've had to join us here, but glad you found us.

I hear you on your concerns about lymphedema. I have lymphedema, and I sure don't like it, but it's not even in the same class as the breast cancer beast. Do make sure you're doing everything you can to beat that one, and then where the lymphedema is concerned, there's a lot you can do to lower your risk.
It's just as you say: information is power! In the medical world, the lymphedema experts are not our doctors but specially trained lymphedema therapists. A referral to one now would be really helpful. S/he'll evaluate your situation, take baseline measurements of your arm for future reference, give you some risk-reduction tips, teach you a gentle massage you can use prophylactically, and fit you for a compression sleeve and glove you can wear for travel, exercise and strenuous activities. Here's some information about how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
And here's a page with information on simple life-style adjustments you can make to lower your risk:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
I hope that helps ease your concerns, kfox, and that your journey through treatment will be a smooth one.
Hugs, prayers,
Binney
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